Methodology

This report is based on research conducted over a one-year period, including field visits to India in March-April 2008 and February 2009. Our field research was conducted primarily in the states of Andhra Pradesh, Kerala, Rajasthan, and West Bengal. We chose these states because of their different levels of palliative care development and their geographic spread. Additional research was conducted in Delhi (National Capital Territory) and in the state of Uttar Pradesh. We also conducted desk research regarding palliative care availability in various other states.

Over the course of five weeks in the field, Human Rights Watch researchers conducted 111 interviews with a wide variety of stakeholders, including 38 people with cancer, HIV/AIDS patients, and a variety of other life-limiting health conditions; 59 healthcare workers, including oncologists, AIDS doctors, anesthesiologists, palliative care doctors, and administrators of hospitals, hospices, and palliative care programs; and drug control and health officials.

We made a decision, based on ethical considerations, not to interview people who did not have realistic access to basic palliative care and pain treatment services: We felt that it would be unethical to ask people to discuss in detail their pain and other symptoms or their—often terminal—illness if they had no possibility of accessing appropriate professional help. As a result, the patients we interviewed were privileged compared to the average patient with life-limiting disease in India in that they had gained access to palliative care services (although many had experienced long periods without such access and had consequently experienced terrible suffering). The picture that can be construed from our interviews therefore does not fully capture the deprivation and anguish caused by poor availability of palliative care and pain treatment services.

One implication of this decision was that we conducted our research mostly in states and at healthcare institutions with some form of palliative care. In West Bengal, where the dearth of palliative care and pain management provision was particularly severe at the time, we did not seek to interview any patients, instead focusing on healthcare workers and government officials.

Most interviews with patients were conducted at healthcare institutions such as hospitals and palliative care providers, or in communities at ad hoc outpatient clinics or in palliative care patients’ own homes. At healthcare facilities we interviewed both outpatients and inpatients. Where possible, interviews were conducted in private. Interviews were semi-structured and covered a range of topics related to palliative care and pain treatment. Before each interview we informed interviewees of its purpose, informed them of the kinds of issues that would be covered, and asked whether they wanted to participate. We informed them that they could discontinue the interview at any time or decline to answer any specific questions, without consequence. No incentives were offered or provided to persons interviewed. We have disguised the identities of all patients we interviewed in this report to protect their privacy. The identities of some other interviewees have also been withheld at their request.

Interviews with healthcare workers and officials were conducted in English. Most interviews with patients were conducted in local languages—Bengali, Hindi, Malayalam, Rajasthani, Telegu, and Urdu—with the assistance of translators. All translators we used were affiliated with local palliative care programs to ensure that they understood the sensitivities of interviewing patients with serious illnesses as well as the basics of palliative care and pain management.

In July 2009 Human Rights Watch wrote detailed letters summarizing the findings of its research to the Ministry of Health and Family Welfare and the Medical Council of India, inviting them to respond to the findings and offering to present comments in this report. Copies of the letters are included in this report in Annexes 4 and 5. When this report went to print in early October 2009, no responses had yet been received.

All documents cited in the report are either publicly available or on file with Human Rights Watch.